My Dear Spaw...that's one helluva post...I've got everything crossed I can cross without falling over! Your determination & fortitude in the face of such adversity marks you out as a Man of unfailing courage. I can but sit here in awe...thinking...wishing...hoping for every scrap of positive change. Drink deep from the Water of Life. Turn your face to the sun...feel the breeze as it ruffles your hair...hold Karen close & remember, there are many here who love you. Many here who would rush to your side & stand shoulder to shoulder...up, up UP on the barricades, fighting your battles with you. My Dear Friend, you are in my thoughts constantly, each & every day, With Love, Nigel xxxx

This is the end of another chemo week and that has always been my lowest point. Made changes in daily meds and diet to better work the balance between the CHF, Intestinal thickening, COD, and the MDS. Today (and this week) I feel better than I have in a couple of years.....and even before the MDS. I look better, have a lot more energy, less O2 demand..went out and ran around yesterday PM and didn't even pack any along....Hard to tell what happens next.

We'll see what the numbers do over the next couple of weeks and know more then. Balancing this crap is a hell of a juggling act and about half of it I know as much about what to do as the Docs. We upped the Lasix but with the water being the best source for stool softeners and the thickening of the intestinal walls, the added Lasix took that water away as well. So I modified my diet. Then I modified the Lasix dosage (okayed by the my cardio guy) to some alternate day dosage levels and things are moving, so to speak.LOL Better yet, there seems to be no fluid at all around my heart....This is serious progress.

Then add that the current chemo has a strong fatigue factor and so is then accompanied by a steroid has obviously helped. I really wanna' see the numbers now....Keep 'em all crossed Folks.

I know, and you should too so there's no confusion, MDS is not curable but I going to buy all the time with Karen I can. While this past year has been great together, there has been far too many 10 day periods of chemo misery and many days spent low in numbers before I can get blood. Nobody my age beats this. Not Nora Ephrom, not Carl Sagan, and not me. But June the 8th is my birthday and my wish is for one more year and especially one where I feel like I do now. Next year I'll repeat that and see how long we can do it!

Sorry, I'm still pissed over the 'Cat but that's just because I do really miss what it once was. Time passes, things change, and as Tom Wolfe wrote, you can't go home again. I'll get over it.......

Hugs once again for the crew here and follow Nigel's good advice: Set the sails...splice the mainbrace...plot a course for the sun.

So glad you're back, Spaw. We need you here. I echo your sentiments: "But I can't leave this place alone for what it means and the reasons for this thread". It's been a frustrating time with the Cat's performance, but today, everything seems hunky-dory. ChanteyLass, I couldn't agree more with your comments about Janie's post. Janie, I reckon Social Work must be one of the most challenging callings. Impossible not to 'take some of your clients issues home', no matter how hard you try. The caring doesn't stop when you leave to go back to the office or finish for the day & despite your best efforts, 'the system' falls short...that's tough...really tough...on so many levels. Sending Love, Hugs & Kisses to you All, Set the sails...splice the mainbrace...plot a course for the sun, Nigel xxxx

Janie, I think your post is appropriate. This thread seems to me to be about caring, and while most of us post about caring for ourselves or people close to us, I'm glad there are people like you who care enough to be upset when people you are not close to need care you cannot provide despite all your efforts. That must be incredibly frustrating.

Spaw, stick around! I'll be happy to read your posts when you can manage them, but if they don't "take," come back some other day. Don't keep trying and letting frustration build. (At least, that's how it works for me!)

I feel terrible about not being here more often but 3d got pretty tough for awhile. I couldn't take all the slowness of the 'Cat and I've thought about just saying goodbye to the fine old girl as I the darlin' cat is but a shadow of what once was. But thinking about it kept making me want to come back just for this thread which I have been reading but on the several posting occasions I had to wait and wait and it dropped my messages.

But I can't leave this place alone for what it means and the reasons for this thread. So I promise you all I will be here and post at least twice a week. I'll let you know what's going on here and maybe just offer up some still pretty good SpawHugs.

we have a lot to do with SW,s ,as foster carers, and they all seem to be under pressure with more cases than they can cope with in a normal working week. they are often piggy in the middle, trying to get resources and finance from ever tightening purse strings. then there is the blame game, where either they should of taken a child into care, or if they do, they are too heavy handed. not the most straightforward of jobs. blessings...and wisdom! pete.

Not particularly appropriate to this thread, which is more of a personal nature....I'm a social worker, 40+ years. Very tough day, but not nearly as tough for me as for the family in need of support on a number of levels that simply are not available.

Nigel, guess what, there are people in the sea!! Crazy or what? We were at the hut Thursday, all day yesterday and this afternoon. Billy took Bunny and Pru " shrimping" no catch but pebbles! But we enjoyed a lovely family lunch in the sun. Walton doesn't change when you are on the beach, still see fathers and uncles braving the cold North sea. The town is a little run down but still has memories of lovely summers for me.

It is three years today that my dear father passed away so we took mum to the cemetery to put flowers on his place of rest. Amazing ,she knew where we were and why!! We all shed a few tears, but later she sat in the garden and her beautiful smile shone through. ( pics on my FB page, please feel free to find me, I still cannot blue clicky, so Rainbow crew I am Wendy Ann Simon on FB)

We are sitting in the garden enjoying the evening sunshine with roast lamb smell wafting from the kitchen. Life is good!!

Nigel, I enjoyed reading about your pleasant memories. I could visualize everything.

Janie, about that video--I wish I could do that!

Frogprince, I too have seen April and I think she did sing, play fiddle, and dance simultaneously, but only briefly. This was further complicated by the fact that she needed a cord attached to her fiddle because for some reason whatever she uses to transmit her fiddle sound cordlessly wasn't working that night. She had to do all three things without tripping over the cord.

We saw April live a few years ago in a house concert. She danced and fiddled at the same time. She also fiddled and sang at the same time. I kept expecting her to dance, fiddle, and sing at the same time, but if she ever does that she didn't that night. : )

I'm visualising Wendy & Billy, down at the beach hut. The sea would be far too cold in which to swim, but I think I could be persuaded to get my toes wet. I'm reminded too, of family holidays, spent at Walton (Just down the coast from Frinton)...beach cricket...woollen bathing costumes...sand in the sandwiches...candy-floss...our old, very unreliable car...my Father rushing headlong down the beach & performing a spectacular 'racing dive' (I was always impressed, no matter how many times he 'encored')...my Mother sitting in a deck chair, suitably unimpressed by my Father's antics...simple pleasures from a simpler time...memories I dearly treasure. With Love, Nigel xxxx

Beautiful day in Frinton, finished work for the day, mother is at the day centre so Billy and I are going to take our lunch down to the beach hut and enjoy the sound of the sea.May even have a glass of wine?

Beautifully put, Janie. I too have experienced the frustration of 'the Cat stuck in the Mud'. I have zero understanding of the technical complexities with which Max has to contend & would feel churlish if I complained. I don't contribute to the running costs as often as I should; something I intend to rectify. I get out more than I put in...that imbalance tweaks my conscience & needs to be sorted, pdq! Greetings, Love & Hugs to you all from sunny London, Nigel (Ann's in NC with her daughter) xxxxx

Yeh. Mudcat has been having some problems that appear, from what I can read but not understand very well, have to do with the host servers Max is using now. Several savy people talking stuff I don't understand about "pings" "host servers" "mirrors" etc. They appear to be speculating based on their much greater technological understanding and programs they have run or can interpret. Very frustrating, but considering what we pay for our subscription fees and that Max is doing all he can to keep a very significant website running on a shoestring budget and volunteer time (his own and that of others,) it is hard to complain.

In any event, the 'Cat has been down for extended periods of time lately, and has been very slow for the most part, for months. We get much more than most of us pay for. I probably don't contribute an average of $50 a year to Mudcat if I were to look at my financial contributions over the nearly 14 years I have been here.

I get annoyed that Max is not communicative at times. But really, that is being unreasonable.

I understand that no one here is complaining, though all of us are likely to feel frustration. Just sharing my flawed understanding about why it is so hard to get on to get our "fix", and beyond that, our concern that we can't communicate at will to reinforce our community.

I think we just have to trust that we all hold one another, and many others in our hearts and minds, sometimes at the front of our minds but always there in our conscious, caring, and loving awareness that we sail on this ship of life, this ship of consciousness, however one chooses to think about consciousness.

Like others, I may not post for several days or even several weeks. I can safely assume that others, just like myself, are on board or sailing along side in the convoy. such a large crew that one can take a rest or disembark for r&r, know there is still a full complement of hands on deck, and that all one has to do is whistle to jump on-board again, either as a crewmember pulling hard at oars or handling ropes and sails, or as a passenger or shipwreck survivor, in need of a little or a lot of succor.

Even though I don't post as often as I once did, and often post simply to indicate I'm still here, I trust that all of you are "present" often, even when not posting or when Mudcat is down, and that you trust that I also am "here", often, whether posting or not.

Knowing there is unconditional care and concern for us matters to our strange species. Within close personal relationships in 3-D, with family and friends, it is sometimes hard to see the unconditional aspect, and sometimes hard to allow it to flow to those we love and have expectations of, even though it is often there. One of the potential benefits of an on-line community is there is a detachment possible that allows for one to feel care and concern and receive care and concern unconditionally. We are all looking to get our needs met, but we do not have the unrealistic expectations of one another that we tend to have in 3-D of the people we know up close and personally.

This place here on Mudcat is like a focused lens used to set a dry leaf on fire. A place to ask for and give objective care and concern, from the heart and from our awareness and compassion for one another. In recognition that the phrase "we are all in this together", means we are never "terminally unique" in what we think, feel or experience, and are never as alone as we sometimes may think we are.

Pete, I haven't delved into Mudcat for a couple of days. When I tried to go to it, it was moving so slowly that I decided to save myself some frustration and went onto other things!

Tami, I'm glad your mother is doing well and that your grandmother will be treated as she and her family wish. I heard Anne Lister in Providence Saturday night and enjoyed her singing. She sang that song.

Talked with Mum last evening, she sounds better than she has in months. My Gramma is on way too many meds, the doctors aren't listening to what the family is telling them: my grandmother has had an irregular heart beat most of her life, stemming from rheumatic fever when she was a young child. Also, she is 89 and still very sharp mentally and has no desire to deal with the physical and mental side effects of the drugs they are giving her. Her regular doctor is siding with the family on this and they will be weaning her off them. Had a lovely chat with Gramma earlier in the week and entertained her with all my spring flora and fauna discoveries. She tells me how much I remind her of her father with my woods knowledge.

And to celebrate this lovely May morning, a song from Mudcat's own Anne Lister (who I will be seeing in concert this evening! Much excitement!): May Morning

The memorial service we attended at WVU for people who have donated their bodies was very nice. I had a bit of a meltdown, which surprised me. Different triggers that left me awash with emotion at times of an intensity I didn't know was still there. Blind-sided myself. That's OK.

I have been AWAL from the Rainbow for a week, stood on my laptop ( don't ask............. note to self, don't go on FB in bed then put laptop on floor and tread on it when getting out of bed during the night, it is expensive !!)

So I have been catching up on the crew this morning and sending hugs and love to every one here xxxxxxxx

Beautiful sunny morning in Frinton, tomorrow the local bluebell woods are open for the day so we plan to take mother.